Symptoms in 5 yr old testing negative

[Mamatomy8]

hello- I'm looking for help here! For the past 15 months my now 5 yr old has suffered from severe abdominal pain, bloating and diarrhea . It has gotten so severe in the past few months he has been hospitalized 3x needing an NG tube and rectal  tube to decompress his intestines from all the air. At first we thought it was a constipation issue but he only ever had loose foul smelling stools.at his last hoapital  discharge I was instructed to insert a rectal tube every 6 hours and flush with saline to keep his bowels from distending with air! We did that for 3 months straight?! What torture for my poor boy.

And X-rays confirmed there was no blockage. He has had test after test , X-rays, MRI,CT, EGD and biopsy twice , colonoscopy, ultrasounds and even cystic fibrosis testing. Only thing that has shown up in blood work is anemia and elevated c-r protein. His GI dr is stumped ( even after conferring with colleagues cannot figure this out) and says she has never seen a kid so severe, even with celiac( although he has tested negative) . Now here's the interesting thing- I. Put him on a gluten-free diet after the testing  was all done and within 2 weeks he started having somewhat formed BMs on his own with no laxatives or suppositories . His bloating disappeared and his behavior improved ( he is also mildly autistic) . So even though the dr was doubtful gluten could be a problem she is saying maybe it's an intolerance. Anyone have a kiddo with such a severe non- celiac intolerance?

 

[nvsmom]

I'm a celiac and two of my boys had celiac disease symptoms (including my oldest who has (formerly known as) Asperger's) but they tested negative on their only celiac disease test, the tTG IgA.  I knew those tests could miss some celiacs, especially the newly developed disease, so I made them gluten-free anyways and I'm glad I did.  Their symptoms "coincidentally" improved within days of going gluten-free.  Gas was less, fewer headaches, better emotional control, five fewer trips to the bathroom each day... I'm fairly convinced that they have celiac disease but it was caught early, and they live as celiacs without complaint.

Technically, my kids appear to have non-celiac gluten sensitivity (NCGS) because of the negative test, but because they have a celiac mother, I really doubt that is it.  It is possible to have horrible NCGS symptoms, just as bad if not worse than a celiac's.  Either way, a strict gluten-free diet is the only treatment.

I would treat him as a celiac and stay gluten-free, unless you are repeating the testing. Give the diet a good 6 months before you judge it's effectiveness.  It can take many months before the body even starts to heal.

You might want to consider removing dairy too.  About half of all celiacs can't handle dairy because the intestines are too damaged to make the lactase enzymes to digest the lactose.  Pain and problem BMs is often the result.

Best wishes.

[Mamatomy8]

Thank you for your response. My son was also found to be lactose intolerant with the biopsy- but he never had dairy much before that either. Interestingly when I took a celiac class at childrens hospital every parent in there with a celiac child also was lactose intolerant . 

[mommida]

I have to assume your son was tested for Eosinophilic Gastrointestinal Disorders (EGID).  The doctor would have to order the testing from the pathologist on the samples from the endoscopy.  The number of eosinophils (white blood cells usually reserved for fighting parasites ~ as there is a small spear like part of the cell to attack foreign bodies)

My daughter was diagnosed with both Celiac and Eosinophilic Esophagitis (EE) and the symptoms are very similar. (but my daughter definitely was vomiting up to 5 times a day)  Gluten can be a "trigger" for EE. Part of the treatment is to go on an elimination diet to determine what the triggers are.  The elimination diet is the "usual suspects"/ top 8 allergens (which you are  already doing gluten free and dairy free) and peas.  If the "triggers" are not discovered, the patient usually ends up on a feeding tube.

Look through your testing results/reports. If you have any scoping pictures, what are the notations?